I’m Here, Looking for a Hand to Hold That Isn’t a Scythe
One night in October, my daughter was up past 3:30 am crying, afraid that I might die soon.
Within a 24-hour period, she was bombarded with several examples, seemingly out of nowhere, of women who died when they were around my age. A plan to see a Frida Kahlo exhibit, an interest in learning more about the writer of “The Lottery,” Shirley Jackson, reading a poem about a mother’s last words to her daughter and hearing about someone we knew personally, all led to the discovery of women who passed in their sleep, three of whom were mothers. It made my daughter fear that I too would soon die in my sleep (May I be so lucky, when the time comes, to go in my sleep. Then again, maybe that’s the heart of my own insomnia).
While this scenario could happen in any family, the tragic irony is that according to GARD (Genetic and Rare Disease Information Center), I am in the life expectancy range for the Vascular Ehlers-Danlos syndrome (vEDS), that both my daughter and I have. Therefore, I can’t quite dismiss her fears with the certainty I would like.
vEDS is a rare, life-threatening, genetic, connective tissue disorder. It’s something you are born with. There is no cure and very little treatment.
Having a medical condition with a shortened life expectancy is not quite like an expiration date on a container of milk, but perhaps more like a “best by date.” I know that anything is possible and that I have a good chance of living longer than expected, maybe much longer in fact; but I feel that each medical setback I’ve had has taken a little bit more of who I am away.
I can view this as life robbing me — carving away parts of myself that I feel are necessary — or as Michelangelo, viewed art: “I saw the angel in the marble and carved until I set him free.” The question becomes is death the ultimate freedom; or will my freedom continue to express itself in my physical body so that I remain living and doing what I love most, being my daughter’s mother?
My daughter and I have a wonderful bond and a beautiful loving relationship. I don’t want to lose her any more than she wants to lose me. I listened to her fears and did my best to comfort her. We laid nose to nose through her tears, holding hands, professing our love. She said, “I have to memorize your face and every word you say.”
It broke my heart to see her in pain and to know that I can’t make her any promises for outcome, only intent. I told her, “I love you so much. I want to live. I plan to live. I am alive, right here, right now. I’m here.” That last sentence got her attention. Her body relaxed, and she began to listen.
I recognized the terror in her eyes, the same alarm I had as a child when I realized that my beloved Papa would someday be gone; and I would have to live without him, a reality I just couldn’t bear to embrace. A decade later, when he was given a shortened life expectancy, he fought it every step of the way. Some of his last words to me were that he wanted to live. He believed in the power of the mind, in intention and desire creating our reality. He did everything “right” (diet, exercise, sense of humor, & zero bitterness) and yet he still died too young. However, his death was not in vain, for it taught me that we always think we have more time than we do.
I often feel like I’m in a race against the clock with the Grim Reaper’s scythe as a second hand. Time feels as if it’s going by faster than ever before. Keeping the balance of being in the present moment, healing the past, and preparing for the future feels like break dancing on a tight rope over a body of water filled with piranhas.
All I can do is keep on twirling to the tune of Stephen Sondheim’s “I’m Still Here,” continue to give my daughter all the love I have, and remind her, myself, and the rest of the world: I’m still alive, and I am living every moment I can to the fullest. I’m here.
My daughter is aware that our genetic disorder comes with a life expectancy, but I don’t think she knows exactly when that is. Every option for transparency around this topic (tell her/don’t tell her) feels as if it comes with traumatizing effects. I focus instead on the fact that no one really knows when they will die, only that death is inevitable, and we can’t preoccupy ourselves with it to the degree that it incapacitates us into fear. Rather let us use it as a tool of awareness to help us stay more present to what’s most important.
Instead of trying to comfort my child’s fears by minimizing or denying them, I provided a space for her to examine and reframe them in a way that could empower her. I asked her questions about what death meant to her. I shared with her my own belief that the energy that makes us who we are never dies, only transforms. I reminded her about the Buddhist tradition of creating intricate mandala art from colored sand and then blowing it all away as a reminder of impermanence.
She later told me that what helped her the most was having her fears heard by me (and not just her stuffed animals). Her biggest comfort and take away was when I assured her that my intention and desire was to live and when I demonstrated that reality by actually saying the words, “I’m here.”
Contemplating our own deaths has lead us to living a more thoughtful and present life. Having an acute awareness of our own mortality is like paying attention to the calendar while on vacation: it helps us appreciate the days we have left and use conscious awareness as to how to spend those days.
We as a family spend less time complaining and more time playing. We make being in nature a priority more than socially obligatory engagements. We take better care of our general well being and health because we have a heightened reverence for our own lives. We focus on being present when we are with the people we love because we never know when or if we will see them again, not to the point of obsession, just to the point of awareness.
Living with the mindfulness that your life has a definitive end gives you permission to live life by your standards, leaving the expectations of others to wash away easily like footprints in the sand. Nature is always there to remind us of impermanence.
In February, my daughter was hospitalized for the fourth time in her young life. This round for flu and pneumonia, complications of a compromised immune system related to vEDS. The tables were turned, and it was I who was afraid of losing her. Even though I never uttered that fear, she nonetheless intuited it. She turned to me and said, “I’m here.”
Sometimes the greatest comfort we can provide to anyone about anything is to simply say, “I’m here” and demonstrate it by being fully present.
Sage Justice is a mother, a freelance writer, and an advocate for those living with rare genetic disorders. She writes open letters to her daughter on her blog and is an award-winning playwright.